关键词: Advance care planning Communication Dementia Internet Support

来  源:   DOI:10.1016/j.pec.2024.108357

Abstract:
OBJECTIVE: This study aimed to evaluate a theory-based website to support people with dementia and their families in the advance care planning (ACP) process.
METHODS: We conducted an eight-week evaluation study with a convergent parallel mixed-methods design involving people with mild to moderate dementia and their family caregivers who used the website at their convenience. Interviews were conducted at baseline and after 8 weeks to evaluate usability, acceptability, feasibility, experiences, and effects on ACP knowledge, attitudes, perceived barriers to engaging in ACP, self-efficacy and skills to engage in ACP.
RESULTS: We included 52 participants (21 people with dementia and 31 family caregivers). In the interviews, all participants considered the website useful and valued the ACP content. Morever, participants reported that family caregivers mostly used the website alone or with the person with dementia. Participants\' ACP knowledge, self-efficacy, and skills improved after 8 weeks compared the beginning of the study.
CONCLUSIONS: The website may be an ideal introduction for those wanting to start ACP, providing user-friendly content and features for initiating and exploring ACP.
CONCLUSIONS: ACP in dementia requires a tailored approach. Extra support is crucial for website adoption, emphasising the role of family caregivers while respecting individuals\' autonomy.
摘要:
目的:本研究旨在评估一个基于理论的网站,以在提前护理计划(ACP)过程中为痴呆症患者及其家人提供支持。
方法:我们进行了一项为期八周的评估研究,采用融合平行混合方法设计,涉及轻度至中度痴呆患者及其在方便时使用网站的家庭护理人员。在基线和8周后进行访谈以评估可用性,可接受性,可行性,经验,以及对ACP知识的影响,态度,感知到的参与ACP的障碍,自我效能感和从事ACP的技能。
结果:我们包括52名参与者(21名痴呆症患者和31名家庭照顾者)。在采访中,所有参与者都认为该网站有用,并重视ACP内容。而且,参与者报告称,家庭护理人员大多单独或与痴呆症患者一起使用该网站.参与者ACP知识,自我效能感,与研究开始相比,8周后技能有所改善。
结论:对于那些想要启动ACP的人来说,该网站可能是一个理想的介绍,为启动和探索ACP提供用户友好的内容和功能。
结论:ACP治疗痴呆症需要一种量身定制的方法。额外的支持对于网站采用至关重要,强调家庭照顾者的作用,同时尊重个人的自主权。
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